Week 24

I have been a bit lazy writing reports on the ASCEND trial, better later than never is all I can say. What stopped me? Actually it was finding something that was worth writing about. This takes a slightly different slant from the previous articles.

24 weeks on ASCEND trial

Every four weeks I need to get out of bed at 7ish in the morning to get the 8.00 train so I’m at the Royal London hospital by 9.30. It is a bit of a struggle, quite often I just don’t function in the mornings, blame it on the MS. I have now had six infusions for this double-blind placebo MS trial. I still have no idea if I am on the placebo or the real thing. Barby thinks I’m on the real thing, but I have my doubts.

Barby’s view

Her reasons for me being on the real thing are as follows. The side effects of Tysabri include an increased risk of urinary tract infections and an increased chance of infection in general. As you all know I was an emergency admission to Stoke Mandeville hospital in the middle of February with a UTI and sepsis. Also during January I twice had an increase in temperature and that laid me low because I get Uhtoff’s Syndrome.

My view

When doing Intermittent Self Catheterisation you can pick up a UTI only too easily. In the winter there are all sorts of bugs and lergies floating around and a fluctuation of my temperature by a degree is not in the least bit surprising. Over the last few months doing anything that requires fine control has become more and more difficult, my writing is virtually illegible. Another sign of progression.

A lot of my friends say that they have never seen me look so well and happy, if only they knew the whole story. I say that the reason why I look good is because I enjoy what I’m doing. The last couple of years of computer consultancy work were becoming a bigger and bigger effort and I was not enjoying it at all.

MS Changes

Over the last 6 to 9 months whilst on the drugs trial my balance has deteriorated. On the other hand the aches and pains in my thighs and legs which plagued me a couple of years ago have all but disappeared. Headaches do affect a number of people on Tysabri and sometimes I wake up with a real stonker of a headache, something that never used to happen to me.

So you can argue it both ways. I’ve no idea when I will find out if I’m a guinea pig. For me the rate of progression of MS has always been slow. First relapse in 1979, that was over 33 years ago and I can still get around.

How good is Tysabri?

In clinical trials Tysabri was shown to reduce the relapse rate by 67% in people with relapsing remitting MS. Not only is the rate of progression reduced but the accumulation of new myelin lesions detected using MRI are reduced as well. The ASCEND trial is being done on people with secondary progressive MS. This is a phase III trial, initial trials must have shown a reduction in the progression rate so yes, everyone has got their fingers crossed.

Its the 6th of March, I have got an MRI scan in a couple of days and my 7th infusion is in a couple of weeks, Wednesday 20th March. I started in September 2012 and the time has flown by.

I have been a bit lazy writing reports on the ASCEND trial, better later than never is all I can say. What stopped me? Actually it was finding something that was worth writing about. This takes a slightly different slant from the previous articles.

I have now had six infusions and I still have no idea if I am on the placebo or the real thing. Barby thinks I’m on the real thing, I’ll tell you why later but I have my doubts. Every four weeks I need to get out of bed at 7ish in the morning to get the 8.00 train so I’m at the Royal London hospital by 9.30. It is a bit of a struggle, quite often I just don’t function in the mornings, blame it on the MS.

Barby’s view

Her reasons for me being on the real thing are as follows. The side effects of Tysabri include an increased risk of urinary tract infections and an increased chance of infection in general. As you all know I was an emergency admission to Stoke Mandeville hospital in the middle of February with a UTI and sepsis, an infection of the blood. Also during January I twice had an increase in temperature and that laid me low because I get Uthoff’s Syndrome.

My view

When doing Intermittent Self Catheterisation you can pick up a UTI only too easily. In the winter there are all sorts of bugs and lurgies floating around and a fluctuation of my temperature by a degree is not in the least bit surprising. Over the last few months doing anything that requires fine control has become more and more difficult, my writing is virtually illegible. Yet another sign of progression.

A lot of my friends say that they have never seen me look so well and happy, if only they knew the whole story. I say that the reason why I look good is because I enjoy what I’m doing. The last couple of years of computer consultancy work were becoming a bigger and bigger effort and I was not enjoying it at all.

MS Changes

Over the last 6 to 9 months my balance has got worse but on the other hand the aches and pains in my thighs and legs which plagued me a couple of years ago have all but disappeared. Headaches do affect a number of people on Tysabri and sometimes I wake up with a real stonker of a headache, something that never used to happen to me.

So you can argue it both ways. I’ve no idea when I will find out if I’m a guinea pig. For me the rate of progression of MS has always been slow. First relapse in 1979, that was over 33 years ago and I can still get around.

How good is Tysabri?

In clinical trials Tysabri was shown to reduce the relapse rate by 67% in people with relapsing remitting MS. Not only is the rate of progression reduced but the accumulation on new MS lesions detected using MRI is reduced as well. The ASCEND trial is being done on people with secondary progressive MS. This is a phase III trial, initial trials must have shown a reduction in the progression rate so yes; everyone has got their fingers crossed.

It’s the 6th of March, I have got an MRI scan in a couple of days and my 7th infusion is in a couple of weeks, Wednesday 20th March. I started in September 2012 and the time has flown by.